Layan Damanhouri Saudi Gazette Nada Nazer, the mother of a 17-year-old daughter with autism, casts a positive smile and a beam of optimism despite the challenges parents of autistic children constantly face. When her daughter Ghalia was little, Nazer could not find doctors to diagnose her child. She and her husband decided to travel to the United States to get the care needed for Ghalia. However, there seems to be little change 17 years later. Today, Nazer says, “In Saudi Arabia, public hospitals are the only places that offer diagnosis for autistic children. And their sessions only last half an hour.” She considered it significantly lacking compared to the United States, where she received a thorough examination coupled with comprehensive care, that were longer. Autism spectrum disorder is a complex developmental disability that affects a person's ability to communicate and interact with others. According to statistics published by the US Centers for Disease Control and Prevention in 2014, approximately 1 percent of the world population has autism. Some reports in the past two years claim the number of autistic children in Saudi Arabia ranges between 250,000 and 400,000 though no accurate official statistics is available. Nonetheless, it remains an obscure subject in society. Nazer says, “Some people would shy away from the subject or keep it a secret. However, my husband and I spoke about it openly.” The couple's voices gradually reached out to others. Nazer says, “I would go to children's birthday parties, malls, or other places and a mother would approach me for advice or help. Sometimes they would just share with me their stories about their autistic children or someone they know with autism.” When such incidents became frequent, in 2010, Nazer decided to start “Mommy Cares”, a support group for mothers with autistic children. From the first meeting itself, 50 mothers started attending. What started as word-of-mouth quickly spiraled into a large community and became immediately active in social media networks. Those living in Jeddah are committed to attending the monthly meetings, where they not only share experiences, but also summon experts to deliver talks and workshops. “People are hearing about it and are asking to join,” says Nazer. “The mothers are relieved to hear about others' experiences because they feel they are not alone. They tell me it's recharging for them.” She adds that WhatsApp helped in reaching out to mothers living in other cities. “Today, we have over 350 members,” she says. “The board consists of women who also have autistic children – and most of them are working moms.” The case is still today. Mommy Cares is not sponsored by outside bodies. Ghalia lives in Jeddah with her family, who continually supports her in all aspects of her wellbeing. Homeschooled by a private teacher, Ghalia is receiving the required diet and medication on a regular basis in addition to her other needs. Her parents don't think it's practical to separate her from her siblings by living abroad. “But what about others who cannot afford all these essential services?” says Nazer, voicing the concern of many parents, some of whom have more than one autistic child in their family. Covering autism treatments costs tens of thousands of Saudi riyals annually. Parents constantly complain about autism centers in Saudi Arabia. Many barely find positive outcomes a year after admission. Nazer explains the centers are not efficient for several reasons. “They are run by incompetent employees. Even if they have special education degrees, they are not trained to deal with autistic children.” Furthermore, Nazer says, “The centers don't invest well in teachers. As a result, the overall quality is low.” For example, many centers only admit children who meet certain criteria. One prerequisite is being toilet trained, an issue many mothers are not familiar with teaching their child at home. Dr. Soher Balkhy, consultant developmental pediatrician at King Faisal Specialist Hospital and Research Center, says, “There is a lack of qualified staff in centers in the Kingdom. In addition, some services are lacking, like speech therapy for example.” She adds, “Some cases with severe disability are not admitted. Also, when boys reach a certain age, their enrollment is not renewed.” Moreover, she says that apart from the major cities, the rest of the Kingdom lacks centers and services. Dr. Balkhy says that family education is important and should be further invested in, as many children have shown improvement when parents work with the center to rehabilitate the child. Despite these challenges, Mommy Cares insists on a proactive approach. The support group aims to raise awareness about autism and have parents' voices heard. “There are also a lot of people taking advantage of the costly facilities and services for autism,” Nazer explains. “At our support group, we warn parents from being used or exploited.” They regularly bring in experts to the meetings to train mothers instead of having to rely on centers. The support group organizes a special event each year on Autism Day, held in April. The first event was a peaceful march in a mall where the moms walked with their children, handing out awareness pamphlets. “Another year we hosted a carnival for them and it was overwhelming to see the joyful reactions of the moms and their children,” says Nazer. “They felt liberated.” Autistic children are not generally welcomed in public places. People consider them harmful and should be left at home, she adds. After persistent pressure by many parents in the Kingdom, the Ministry of Social Affairs announced it would cover the fees for autistic children getting schooling at the centers, a temporary step until public schools are to be established. “Adults remain marginalized as well,” adds Nazer. “The next step should be to support them and find them jobs. Many places claim they have jobs but don't train them beforehand, causing a vicious circle.” Research on autism remains incomplete, with contradicting studies and theories, including identifying the causes of autism. The universal logo, a puzzle piece, elucidates the ambiguity of autism. Nazer says, “People need to know it's an epidemic. There needs to be more awareness in the world about autism.”
